Enough is Enough

Jim finally came home last Tuesday after spending 27 days in the hospital. With so many ups and downs, it was finally a relief to be able to leave the hospital. While still weak, he continues to improve after almost 7 days being home. His appetite is coming back and he needs pain meds less and less.  He seems to be getting stronger each day.

He entered the hospital with a tube in his belly and came home with a tube in his back. He has a drain bag still connected to the one abscess near his kidney. He came home with 2 tubes on the left side of his chest for hemo dialysis. He came home with 2 other tubes on the right side of his chest for IV medications and blood draws. He has lost 40 lbs. He is on IV antibiotics until mid-April.  I have put my nursing skills to work once again and give him the infusions nightly.

He has started hemo dialysis at the Belleville Davita center on Monday, Wednesday and Friday afternoons. Dialysis was something Jim never thought he would have to do. Now he has experienced both PD and Hemo. I must say that PD is so much better. It is so sad and depressing seeing all the people at the clinic needing dialysis to sustain life. Sad....

We hope to finally get back on the right track. It will take time for him to build up his strength but hopefully the transplant will be right around the corner. Let's hope because enough is enough already.

Hope

Jim is still in the hospital. 3 weeks to be exact. While he seemed to be improving, the last 4 days he has been experiencing belly pain again. After having a CT scan done today, it shows 3 abscesses in his belly. One on each of his kidneys and the 3rd in his pelvic area.The plan is to have them drained tomorrow.

We then hope his pain will improve.
We then hope he will be off pain meds.
We then hope he will be back to normal and able to stay awake.
We then hope he will get his appetite back and once again enjoy his food.
We then hope he will be able to come home.
We then hope he will be able to continue hemo dialysis.
We then hope he will get stronger.
We then hope for a transplant.

We will never give up hope....

Good Bye PD Cath

Jim has been in the hospital now for 12 days. While his peritonitis originally was clearing up it has now returned. The culprit they think is now his pd catheter. More tests show there is a fungus growing on the catheter which definitely is the source of the current infection. The only option is to remove it. However, before it can be removed he must have an access for the hemo dialysis which he will have to switch to. However, before either the catheter is removed or the access put in, and because he was on a blood thinners he had to be transfused with blood. That is what happened today.

Tomorrow if his blood is ok, they will put in the access port and hopefully remove the cath. This means he will be able to start hemo immediately. Antibiotics are still being given and hopefully will help ease the pain he is in. For now he is ok with the hemo. This means he will have to go to the dialysis clinic 3 days a week for 4 hours of treatment.  Hopefully it will be only for a short period of time until he is transplant ready.

While this is certainly not the road we thought we would be on, it's here and we are dealing with it. It's especially hard since his February 13th transplant date was so close....

My thoughts....There is nothing worse than seeing someone you love in pain and hurting. We all try our best to make things easier. Sometimes that's never enough. We take each day one day at a time and hope tomorrow will be brighter. I walked down to Children's Hospital one day last week to see my friend Alicia and her beautiful daughter Mya. Seeing so many sick kids and what it is they go through I realized we are not in this alone. So many people have bigger problems and that's just part of life. A life no one deserves. I pray for each one of them too.

More Bumps in the Road

Last week Jim was diagnosed with uremia. That means he hasn't been getting dialyzed well enough and the toxins in his body were making him very tired and lethargic. He was increased to 9.5 hours on his cycler at night and started a manual exchange in the afternoon. He was also given an iron infusion. This all seemed to help and he was much more alert. Back on track with walking/therapy.

Monday he experienced diarrhea and by Wednesday bad belly pain. Draining some fluids which was cloudy it was determine he now has peritonitis which is an inflammation in his peritoneal cavity. Went to the clinic and they drained him and dosed him with high doses of antibiotics. Pain still so bad we went to Barnes. Finally admitted and started iv pain meds. Pain is under control but still having cloudy bags. Waiting for results of cultures to determine what type of infection he has.

Hopefully this is the last of bumps in the road.

Good News/Bad News

The good news is that Jason doesn't have to have surgery for now. Dr. Dowling said the lesion (tumor) seems much smaller than what was on the original MRI. Since he seems to be responding well with the medication, for now he doesn't feel that surgery is necessary. He goes back in 3 months for another MRI to see if the tumor has grown any and at that time he will reevaluate the need for surgery. Yay!!!

Jim's news, however, wasn't as good. The transplant team wanted to see Jim before rescheduling surgery. Jim is still very week, walking with a walker and seems very fatigued. They want him to get stronger before the surgery and told him to keep working on his therapy and come back in a couple months. While this wasn't the news we were hoping for, in our heart of hearts we too feel it's the best for now. It was just extremely hard to take given it was February 13th...the day he was scheduled for the transplant.

My thoughts...I'm so very grateful that my son doesn't have to have brain surgery.  I also know that Jim needs to be healthier to go through a major operation. It's just hard when it seemed so close. This is just another detour that we will deal with.

There's no place like home

After 2 weeks at rehab, Jim finally gets to go home tomorrow.

He has reached all his goals in both occupational and physical therapy. His walking with the walker is going great and he continues to improve his distance each day. He will continue therapy at home when a home health care therapist will come twice a week.

After being away from home for an entire month, he is beyond words about going home. I'm taking 1 more week of FML next week to keep him on track then hoping to get back to work and some normalcy.

We will contact the transplant team next week and tell them of his improvement with hopes of getting back on track. I have always been a believer that "things happen for a reason". Not quite sure why Jim wasn't suppose to have transplant next week, but that's totally out of our hands. I know this extra time will in the end of it all be good for him.

Jason has appt. with his neurosurgeon on Thursday we hope with a decision for his treatment. Hoping I won't have the both of them in the hospital at the same time as we did in January, but if so...we will get through it.

Jim Update

Finally after 2 weeks in the hospital Jim was released yesterday.  However, homebound we're not.  Mobility in his right knee keeps him from coming home. So our new home this week is the Barnes Jewish extended care facility in Clayton for rehab on his knee. More intensive therapy hopefully will get him moving and capable of walking unassisted again. It's been since November 23 that he was capable of doing that.  Too long. Contacted transplant team to let them know and transplant will most likely be pushed back another week.  That's ok, by then he should be up and walking and in much better shape for surgery.

Jason continues running tests but so far no more seizures have occurred. Thanks to family and his friends, the not driving thing hasn't been much of an issue. 

Again thanks everyone for your prayers and support.